Tips for Life with Epilepsy (and How to Create a Seizure Safety Plan)

Epilepsy can be a scary diagnosis, especially when you don’t know much about it.

Seizures are a brain disorder, caused by irregular and abnormal electrical connections. They can happen at any time and are often unpredictable.

Epilepsy generally starts in childhood or early adulthood and is the fourth most common neurological condition. An estimated 4 percent of the United States population will develop epilepsy at some point, according to the Epilepsy Foundation.

In addition to learning as much as you can about the condition when you or a loved one is first diagnosed, it’s important to figure out how to regulate a life with epilepsy.

How to Manage Epilepsy

Preparing for the unexpected is your greatest defense. You can take these steps to manage your diagnosis and protect your health:

Find the right doctor

The first step in managing epilepsy is establishing a good relationship with your doctor, who should be an expert in treating this neurological disorder.

Your doctor may prescribe medicine that can help control the seizures. Other treatments are available if medicines aren’t working. Our team at the UPMC Epilepsy Center can help you learn how to treat and manage epilepsy.

Track your seizure triggers

People with epilepsy find it helpful to pay attention to their seizure triggers when it comes to things they can control, such as stress, a lack of sleep, or other lifestyle factors. Be aware that things you cannot control, such as llness, a medicine change (even those not used for epilepsy), hormonal changes, diet, and exercise, also can affect seizure activity.

Plan, plan, plan

Develop a seizure response plan for yourself or a loved one.

It’s important to be prepared for seizures to enable those around you to be of help. A seizure response plan is a written document that provides general medical information about the person with epilepsy (including personal identifying information), emergency contacts, details about his or her specific seizures, medicines, and information on what to do if a seizure happens.

The Epilepsy Foundation has a worksheet you can fill out and keep with you.

Let people know

If your child has epilepsy, this seizure response plan should be on file with teachers and the school nurse’s office (or wherever your child spends time, such as an aftercare program, camp, or with a babysitter).

For an adult, the plan should be shared with coworkers and kept in your purse or backpack in case you experience a seizure while out in public. Some people wear a medical alert bracelet or pendant, which helps first responders.

Life with Epilepsy

If you’ve had epileptic seizures, some of your daily life likely will change. One thing that can be hard for people with epilepsy is the inability to drive.

In order to obtain or keep a driver’s license when diagnosed with epilepsy, your state may require you to prove that you’ve been seizure-free for a certain period of time. While this makes sense, it can be difficult (and sometimes expensive) to rely on public transportation, friends and family, or a driving service. Talk to your loved ones and living partners about the best way for you to get around.

There are other activities that may be restricted, including adventure sports like scuba diving and skydiving. Even when swimming, you should take additional precautions, like making sure someone is watching and available to help, if needed.

If you have epilepsy, you might consider joining a support group or reaching out to others with the condition. Having an outlet to share ways to manage life with epilepsy and knowing others who are going through a similar experience is not only comforting, but provides support and actionable ideas that can help you.

There are a number of places to find educational opportunities and support, including the Epilepsy Foundation. This organization provides educational options, support services, and other resource lists (including transportation services information and assistance understanding health coverage, kids’ camps, and financial assistance, to name a few).

A person who has tried two medicines without success should be seen by a comprehensive epilepsy center, according to the American Academy of Neurology.